A lawsuit against the banking of baby blood in New Jersey failed, as parents sued the state demanding that the samples be destroyed after analysis.
Nearly all babies born in the United States have blood drawn to check their risk of some 60 rare diseases, but the New Jersey Department of Health has been storing infant DNA for 23 years and gives access to authorities and outside researchers.
Two parents filed a class-action lawsuit in November 2023, which was resolved Thursday with a new directive that reduced the retention to two years.
Attorney Brian Morris, who represents the parents, said: “This is a small step in the right direction, but the state still refuses to do the only thing that will make its retention program constitutional: ask parents for their informed consent.” .
The class-action lawsuit was filed in 2023 after news broke that a 1996 cold case was settled when police allegedly collected a baby’s DNA without a warrant to investigate the child’s father.
The New Jersey Department of Health reduced the storage time from 23 years to just two after parents sued alleging the program violated the Fourth Amendment, which protects Americans from unreasonable seizures by the government.
Boonton mother Erica Jedynak, one of the plaintiffs in the case, said Thursday: “Until the state actually asks parents for permission before withholding their baby’s blood, we will continue to fight this policy in court.”
“Parents deserve to know what the government is doing with their children’s genetic information.”
Cranbury resident and plaintiff Hannah Lovaglio told DailyMail.com in November: ‘This is a real parental rights issue. This is your body; These are their assets that were taken from them after five years of being minors, and the State is not obliged to give any justification.’
Morris told DailyMail.com they plan to move forward with the lawsuit, especially after learning that New Jersey plans to ask the court to dismiss it due to Thursday’s schedule changes.
“Obviously two years is better than 23 years, but the length of retention is irrelevant if the state refuses to obtain informed consent from the parents,” he said.
‘The state did not say why it chose two years or why it couldn’t ask for informed consent first. But until the State first asks for its consent, we will continue to fight.’
Genetic testing of newborns began in the 1960s in hopes of detecting diseases and conditions that could kill a child or cause serious problems: 61 congenital diseases and disorders are tested.
Nurses fill six spaces on a special filter card when administering the test which is then sent to a laboratory for analysis, but leftover samples are stored for the specific time allowed.
According to the state of Minnesota’s website, samples are retained so they can be retested, used to identify a missing or deceased child, and for medical research.
In 2021, Brian Avis, 61, was found guilty of sexually abusing a 10-year-old girl in 1996 after New Jersey police analyzed the DNA of Avis’ son, who was born in 2012.
While data on how many samples have been stored is scarce, one report states that in 2009, 13.5 billion newborn blood samples were stored nationwide.
Most states have been storing child DNA since at least 2001, while California began storing samples indefinitely in 1983.
Morris, a lawyer at the Institute for Justice (IJ), told DailyMail.com in November: ‘New Jersey is among the worst. The biggest problem is that it is a black hole without regulation to regulate this retention.
‘There is nothing stopping the New Jersey Department of Health from doing anything with the samples.
‘This is not just a parenting issue, but also a digital privacy issue. The government can step in and take whatever it wants, and we’re trying to protect individuals from that.”
In March, the two sides had been in talks to settle the class-action lawsuit out of court.
Attorney General Matthew J. Platkin said in a March 4 letter: ‘Over the past several months, the parties have engaged in settlement discussions to try to resolve this dispute in good faith.
‘Those discussions have been productive and the parties plan to continue negotiating in the hopes of reaching a resolution that would ultimately obviate the need for further litigation.
Platkin announced the changes to the program on Thursday, but the update still does not require the state to ask for informed consent before withholding blood, nor do it implement safeguards on what the state can do with the samples.
The board explained that records and bloodstains can only be obtained through a subpoena issued by the court.
Previously, law enforcement could gain access through a grand jury subpoena, a search warrant based on probable cause, or an administrative subpoena.
Platkin also noted that “authorities have almost never attempted to use this material as part of an investigation.”
But officers allegedly illegally obtained blood samples in 2021 to convict Brian Avis of the rape of a 10-year-old girl in 1996 and a five-year-old girl in 2003.
Boonton mother Erica Jedynak, one of the plaintiffs in the case, said Thursday: “Until the state actually asks parents for permission before withholding their baby’s blood, we will continue to fight this policy in court.”
Cranbury resident and plaintiff Hannah Lovaglio told DailyMail.com in November: ‘This is a real parental rights issue. This is your body; These are assets that were taken from them after five years of being minors, and the State is not obliged to provide any justification.’
The samples were obtained from the card of Avis’s now 12-year-old son, leading to his arrest in 2022.
Avis was sentenced to a full term and is serving 17 years in New Jersey State Prison.
‘There is a Fourth Amendment right that (protects people from unreasonable searches and seizures by the government) and the Supreme Court recognizes that parents have a fundamental right to protect their children and make decisions,’ Morris said.
“We’re saying the state is violating that.”
New Jersey has a lab in Trenton where samples are sent for disease testing, but the warehouse where they are stored is unknown.
The lawsuit claimed the lab processes more than 100,000 newborn tests each year.
“This is a small step in the right direction, but the state still refuses to do the only thing that will make its retention program constitutional: ask parents for informed consent,” Morris said Thursday.
‘Obviously, two years is better than 23 years, but the length of retention is irrelevant if the State refuses to obtain informed consent from the parents.
Institute of Justice (IJ) lawyer Brian Morris told DailyMail.com: ‘New Jersey is among the worst. The biggest problem is that it is a black hole without regulation to regulate this retention.
“Attorney General Plotkin had the opportunity to make this program constitutional, but this certainly does not do it.”
In December 2020, it was revealed that investigators in California had sought access to newborn screening samples for criminal investigation purposes and made at least one arrest using the genetic material.
The Centers for Disease Control and Prevention in Atlanta, Georgia, proposed in 2002 to database DNA-filled newborn blood samples and use them (apparently without parental consent) for additional purposes beyond the program. of childhood genetic screening, according to the Citizens Council on Health Care.
Some states, such as South Carolina and South Dakota, destroy blood spots after a year or as soon as testing is completed.
Other states that store DNA from newborns for years have regulations to limit what can be done with the samples, and some, like Alabama and Arizona, allow parents to opt out of withholding blood.
About 29 U.S. states provide parents with forms to refuse testing, including Alabama, New York and Nevada.
